Tuesday, April 30, 2013

In the Ipswich Star last week, a lady called Sarah Ashford spoke about the terrible situation the UK government's Bedroom Tax has placed her in;

“It’s a vicious attack on the most vulnerable people in society, especially somebody like me who didn’t have a choice to be born disabled. I was a breech birth back in 1964. I should’ve been born by caesarean and I should’ve been a normal baby.”

It's not in any way Ashford's fault that she is forced to speak like this, invoking the events of fifty years ago to prove that she is not to blame for her impairment. So much mainstream discussion of disability - especially the effects of austerity cuts - hinges on this language, this need to demonstrate that the people effected are worthy of charitable treatment. Words like innocent, genuine and victims pepper even the language of some disabled activists, although the implication is quite clear: there are those of us who are innocent victims of circumstance and there are those who brought misfortune upon themselves.

..........

Hideous! A pale-skinned foot with
a heavily bandaged big toe.

I'm just finishing a second course of antibiotics for gruesomely infected toe. It's not painful, but it's been disruptive and draining and as of writing, it is still infected. Before the cause was established, I was variously asked whether

I had cut my toe nails too short.

I had let my toe nails grow too long.

I hadn't rinsed my toes when washing.

I hadn't dried my toes after washing.

I had let my feet get too hot.

I had let my feet get too cold.

Or, most ironically, given my circumstances,

I had been walking about in impractical ill-fitting high-heeled shoes.

Some of these suggestions were made by family, others by medical professionals. I was so relieved when finally I saw a podiatrist, who explained in CSI-style detail that I had badly stubbed my toe (she could tell the precise angle it had happened at and everything).

It's ridiculous I should feel such relief. Any other cause would have been just as accidental. I struggle with washing, drying and maintaining a stable temperature, and poor co-ordination makes my nail-cutting decidedly inexpert. The podiatrist said this long winter has brought about something of a chilblain epidemic. This stuff happens to people.

But I know my responsibilities. I have to be trying my best, to be as healthy as possible. I have to do all the right things, and be seen to be doing all the right things, to avoid relapse, infection or complication. So none of it is ever my fault. Other people can afford to make themselves vulnerable in small unwitting ways, but not me. Any infections I get will be despite my very best efforts.

Other people have it even worse. Some years ago, I was awkwardly introduced to a friend of a friend who had my condition, and believed that she was improving with the help of some extremely expensive, extremely dubious alternative therapy. Her parents were paying ten thousands pounds a year - much more than my annual income - on these bizarre potions from a man who had convinced her that she was now cured but she had to keep taking the potion and seeing him regularly because her body hadn't let go of all her symptoms (or, in fact, any of them).

She was a very difficult person to speak to, as she thought everyone should be doing the same.

She said, "You've always got to be trying something to get better. Otherwise, you've given up."

.....................

We've developed a morality around health and healthy living to rival previous generations' interest in other people's sex lives. Food, which should be all about fuel, nutrition, social activity and sensual pleasure, has acquired the language of sinfulness and virtue; this devilish chocolate cake, this goody-two-shoes salad. People sometimes boast about doing physical exercise they actually hate, in much the same way a Medieval penitent might have celebrated how very very itchy his hair shirt was.

The wages of sin are not only death, but illness and disability in the run-up.

There's a get-out clause, of course, and that's if you can stay healthy, looking healthy. You may still boast of your efforts to steer clear of those satanic carbs and to practice Zumba like Saint Francis of Assisi, but as long as you remain non-disabled and slim enough, it's all hypothetical. It's all a bit of a joke really if you eat nothing but pizza and cigarette smoke. Only if you're disabled or fat is an adult likely to get earnest advice about diet, exercise, drugs and getting enough fresh air and sunshine. And since some of that advice will contradict (carrots are a panacea; carrots are a poison), we can never get it right.

It's particularly hard for disabled people to make healthy choices, let alone be seen to make healthy choices. Pain and distress can make avoiding drink, cigarettes and drugs more difficult. Many prescription drugs are fairly bad for you, especially long term; it's just that in the balance, their effects are preferable than the alternative. Digestive problems, poor care, poverty, allergies and intolerances mean that disabled people often have diminished choices about what they eat. Poor mobility and metabolic problems mean disabled people have less choice how much weight they carry. Physical impairment, as well as poor access to gyms and swimming pools, social anxiety and the reasonable fear of exposing one's body to a world that has declared it substandard, are all barriers to exercise.

Yet despite all this, we are under the greatest pressure to try. To try and do the right things. To be seen to be doing the right things.

...............

Obesity is a very popular subject for moral panic. It's supposedly about gluttony, an old-fashioned sin and one we're all vulnerable to, because we all have to eat and most of us enjoy it. It's also about beauty standards, or their opposite and the thrilling opportunity - so rare these days - to judge others by their appearance. And then it is about health; people not looking after their own health, which is, apparently, a sin against us all.

This, despite the fact that half of us are overweight, the population overall continues to live longer and healthier lives.

In her post Chronic Illness, Diet & Food, Em describes about how, faced with her particular collection of complex physical and mental health issues, her doctors prefer to focus on her weight:

"I've hit a point where I'm too tired to fight it any more. The crushing pressure has become too much and given my other health issues it's just too much extra for me to keep battling on against. I have grudgingly agreed to see the local "Weight Management Services". Not because I want to lose weight but because I don't want to spend over half of every appointment I attend talking about my size."

We know our responsibilities. We have to be seen to be trying our best. We have to be blameless.

.............

The focus on the innocence or responsibility of disabled people removes the need to consider the physical, social and political barriers which set artificial limitations on our lives, above and beyond the problems our impairments cause. We are either individually responsible for our limitations, for our worklessness, for our difficulty getting up stairs or staying awake. Or we are the innocent victims of shocking and terrible events to be pitied, cried over during telethon evenings and forgotten about.

I think of this when people question our numbers. The World Health Organisation says we are one in seven. Both our Prime Minister and our Minister for Disabled People have both stated their intuitive disbelief about the number of people legitimately claiming disability benefits (much much less than one in seven). Last week, Ester McVey stated;

"Only three per cent of people are born with a disability, the rest acquire it through accident or illness, but people come out of it. Thanks to medical advances, bodies heal."

Only people who see impairment as an uncomplicated individual tragedy would be so anxious about the numbers. Because great personal tragedies, unthinkable, unsolvable, life-sucking tragedies - the type where you think, How do people go on? are thankfully quite rare. Every day bad luck life events? Really common. People fall and damage their back forever. People get an infection and never recover (hopefully not a toe infection!). People have bad experiences and are left with mental scars. People's own bodies and brains rebel against them. It sucks. Folk have to grieve. But then we try and get on with life.

And then we hit fresh barriers. The built environment, systems, prejudice, media representation and public attitudes. And the responsibility, ever to show ourselves to be innocent in all this.

Because it's never anyone else's fault if the world is built for strong legs, strong sight and hearing. It's not anyone's fault if someone is stared at, sometimes shouted at, whilst going about our daily business, vulnerable to abuse, discriminated against at every turn. It's not anyone's fault if we find that people like us are demonised in the press and in fiction, and that those messages slowly but surely sink in, changing the way in which we understand ourselves, forcing us to recount our medial histories and prove ourselves blameless.

Saturday, April 27, 2013

Arguments about the absolute minimum amount of money people need to survive on should be confined to history, but have become tragically relevant in recent years. Benefit cuts threaten to push already poor people into dire straits. This is a scandal, but BBC news approaches this like an amusing lifestyle conundrum, publishing How little money can a person live on?and today, an article that really made me cross;

How to eat healthily on £1 a day
which should be titled How to survive on £1's worth of food a day - there's a lot more than £1 being spent on food, travel and cooking and there's little evidence of the healthily bit. For example, there's nowhere near the five daily 80g portions of fruit and veg recommended to by the World Health Organisation.

This kind of article angers me because it is about poverty as a hypothetical experience, being used for entertainment. There's no practical advice here, nor is there any discussion of why anyone should be in this position and what needs to be done about that. (See also, Pippa's Pretending To Be Poor)

I am not in poverty any more - I have a low income and am having to live with parents in my thirties, but I have eaten purple flowering broccoli in the last seven days, so I am definitely not poor. Nor have I ever been so poor that I was hungry. Poor people are poorer now than they used to be. Benefits have been cut, especially housing benefit and many disabled people are having to endure periods of extreme poverty whilst appealing bad decisions on Employment and Support Allowance.

As well as using the suffering of others as an entertaining thought experiment, there are really six massive problems with the idea of eating healthily on £1 a day:

1. Poor people cannot afford to waste food.

All the meals listed include small portions of bulk buys - for example, 1/4 courgette which was bought as part of a six pack. You can't say you're eating on £1 a day, if you're spending £1.60 on courgettes and wasting 95% of what you bought. The Oh My God Dinner actually totals a bank-breaking £8.31 unless you

(a) share your meal with the rest of the street

(b) use up all the spare ingredients in other meals

Pasta is no problem, but eating six courgettes at a rate of a quarter a day? If there's one of you, there's guaranteed wastage. Otherwise, you need to be eating these tiny portions of courgette on a near daily basis.

Or it could be you

(c) happen to have all these bits and bobs at the back of your fridge. Which you don't.

This latter point really frustrates me. I remember reading an article which described poverty stew and included a wilting leak and some scraps of prosciutto found at the back of the fridge. I had to look up what prosciutto was (back before I rose to the heights of purple flowering broccoli consumption). Anyone who is finding perishable surprises in their food cupboards either isn't poor or is extremely new to this business.

Very quickly, you learn to plan. You don't buy anything you're not going to eat. If you do one weekly shop, you eat or at least cook the fresh stuff at the beginning of the week, and live off tinned food or things you've cooked and frozen at the end of the week. You never face old vegetables because you ate everything when it was fresh.

The only time there are leftovers is when you made a mistake (which happens), someone gave you food unexpectedly or you've been too unwell to prepare or eat the things you planned to.

2. Poor people can't shop around like that.

All the ingredients in the meals the journalist supposedly ate came from their cheapest supermarket source, with items from Asda, Tesco, Morrisons and Sainsbury's going into the same meal. There may be areas within the big cities where all these places are all within walking distance, but poor people are unlikely to live in those places.

Folk living on the breadline are unlikely to have their own transport and any money they spend on bus fare is money they can't spend on food and other essentials. I'd guess that most people only have access to one supermarket. Most people don't have the time, money, physical or mental energy to perform the calculations and travel between different supermarkets, buying the cheapest option for each ingredient. That would render food shopping a near full-time occupation.

I have never lived within walking distance (let's say a mile) of one supermarket, and I've lived in three different towns (one big, one medium, one small) and three different villages (only one of which had a supermarket). On-line grocery shopping has made most sense, since it was first available, but you're not going to pay for deliveries from more than one shop.

3. Poor people can't always eat whatever happens to be available.

I don't consider myself to have complex dietary needs, but I can't eat the white bread and biscuit diet proposed by the article. I need a very high fibre diet, and that's when I'm already on a metric tonne of prescription laxatives. Stephen would fare even worse, being outright allergic to dairy and eggs, and intolerant to wheat and garlic, among other things. Wealthy middle-class people can afford to eat fad diets based on the idea that their extra-special bodies can't digest this or that, but some bodies really can't.

Then you have diets based on religious taboos, ethical positions and food aversions. These are not to be underestimated; it is really a huge ask to expect people to eat foods that they consider disgusting. If they were stranded on a desert island (as opposed to the dessert island I spelled originally) and it was pork scratchings or death, folks would compromise. But such fundamental compromises should be completely unnecessary - unthinkable - as a consequence of unemployment in the United Kingdom in the twenty-first century.

4. Poor people can't always cook.

This isn't about the absence of skills - skills can be learnt and goodness knows there are enough television programs demonstrating how food can be prepared. This is about the absence of energy or capacity through illness or impairment, the absence of time because of work or caring responsibilities and the absence of the tools and materials - hobs, an oven, a microwave, some surfaces to prepare food on, space to cook, pans, knives, chopping boards etc.. as well as everything you need to clean up afterwards.

There's also the cost of cooking in terms of gas or electric, which is another very tricky calculation - variations on jacket potato may be a very cheap, nutritious meal, but not so much if you have no microwave and have to put an aging electric oven on for an hour and a half every day.

There are many gadgets and gizmos which can help with frugal healthy eating, such as a slow cooker. But you need to be able to afford and have secure space for that stuff in the first place.

5. In reality, calories are cheap. Healthy food isn't.

The real reason that you don't find people starving to death in 2013 UK is that calories are cheap. It's quite easy to get 2000 calories out of £1 worth of cheap cake, pastries, biscuits, sweets, crisps or peanuts without having to put down £8 on a meal and hope to use the leftovers with equal efficiency. This is why there's a correlation between poverty and both obesity and malnutrition (which can and frequently do go together); calories keep us alive, but not necessarily in very good health.

6. Nobody should ever have to live like this, ever!

Are poor people part of society? What do we want to do with them? If poor people are going to be (a) in any position to improve their situation or (b) not end up costing the state in terms of poor health and crime, they need to be able to eat decently. They need the absolute minimal level of dignity that comes from having some choice about what they eat and not having to worry about going hungry. This is especially the case for children, but applies to absolutely everyone.

We're a country recovering from a recession, but we're still the seventh richest country in the world. We measure extreme poverty on a global scale when a person has to live on less than $1 a day. We shouldn't be talking about people on our own shores living on £1 a day ($1.55) as if that's just a sign of our times.

Tuesday, April 16, 2013

I can talk about loneliness because I have passed beyond it. It's very hard to admit to at the time, because there's something a little pathetic about the admission. Because successful loveable people have soulmate partners, plus close friends and family around them, and would never feel that way.

The loneliest period of my life was my twenties, especially my mid-twenties. I was in an abusive relationship and not the kind that's sometimes very bad and other times great. As well as the isolation of living with someone who didn't really want me to interact with other people, illness stopped me getting out and reduced my capacity to keep in touch.

....

I think I have a lot of equipment which helped me cope better with loneliness than I might have. For one thing, I was never without decent friends or family, it's just that my contact with them became complicated, muffled by physical distance, caution and dishonesty. I have always had a complex fantasy life. It's less complex, now I'm happy - and that's good: I can focus on the stories I'm writing, as opposed to being whisked off into the stories I want to live. It used to be very strange to me to think that some people, sitting on a train, walking along the street, were not imagining themselves as someone else, in a different situation, on another mission entirely. I didn't even know that you could have sex and your mind stay in the same room. When I wrote about my imaginary friend, we were still in regular contact.

Plus, it helps that I have this. I don't mean this blog, which really did help enormously (despite the fibs I used to tell). But when I have thoughts, I am inclined to write them down. I still occasionally write letters that I don't intend to send to people, just so I can clarify my own feelings.

It also helped to make things and paint things - portraiture is pretty good. Making gifts, imbuing them with love for someone elsewhere. And helping people, in some small way. Anytime I felt useful, I didn't feel lonely.

....

One way I was less well equipped than some was that I was brought up to believe that you never do anything that isn't for a purpose and there are no purposes that don't involve other people. I was criticised as a child for my story-writing because it wasn't for school, I often started epic stories which could never be finished, so never read by anyone else and no-one was interested anyway. I was wasting my time.

This made me - makes me - not so good at looking after myself or entertaining myself, outside music and my own imagination.

....

Fiction allows people to be very alone at the beginning of a story. Few adult protagonists have both parents, and unsiblinged orphans in their twenties and thirties are so commonplace it's rarely remarked upon. But here, solitude is a useful thing. As well as being character-building, it allows a person tremendous mobility - without anyone to worry about them, a lonely person can take off when they like, go where they like, interact with others on their own terms, walk into all kinds of situations of peril, responsible only to themselves. I couldn't do that.

Meanwhile, loneliness is usually temporary. The lonely protagonist has no problems interacting with people and by the end of the story, they've often found their one true love who will fulfill their every psychological need and made a few good friend-for-life along the way.

And loneliness in stories is often a false construct. Having missed it all in my teens, Stephen introduced me to Buffy The Vampire Slayer and now we're watching the selected highlights of Angel. The character of Angel isn't just another loner PI; he knows the loneliness of immortality, of being a vampire with a conscience, hated and feared by humans but condemned to conflict with his own kind - the actor's face seems locked on constipated brooding, so it must be pretty grim. But Angel hardly has a chance to be alone, let alone be lonely. He has good friends, he has all kinds of friendly acquaintances and almost everyone he meets appreciates and reaches out to him. He perhaps just needs to read this excellent post about bowel health.

I can't think of another fictional supposed-loner with such a vast and positive social network, but the majority of supposed loners are not, in fact, alone. Plus, they're generally men - and fairly macho men at that, isolated, in part, by emotional... well, constipation. Women are rarely placed in even the most romanticised heroic position of solitude(even Ripley, having been frozen for decades as the sole survivor of Alien, is given a child to save (Aliens), then a man to have a fling with (Alien 3), then an alien to have a weird and mucussy maternal relationship with (Alien Resurrection)).

In any case, a lonely person in a story is never truly alone, because you are there. You are with them all the time. And happily, for the duration of the story, they are there with you.
....

Of course, I was being abused. I would have been much better off had I been single and lonely, because (a) personal safety, (b) it would have freed me from the paradox of being lonely whilst "in love" and (c) I would have lived life very differently and may have been less lonely as a result. It is difficult to separate the effects of the abuse and the loneliness, but I'm sure I would still have been lonely if the marriage had been unhappy in a more banal way, or if I had been single and sick in a bad geographical location.

Two empty chair backs in silhouette.

But loneliness begets loneliness.

These days, I assume that people who talk to me like me and people who don't take much interest are either disinterested or have too much else going on. I'm sure that I irritate or offend people once in a while, but in the absence of any clear evidence, I give us all the benefit of the doubt. In fact, I imagine that a lot of people I interact with a little bit would like to get to to know me better, if only there were a few extra hours in the day - because that's how I feel about many people.

(It's not that I never wake up in a cold sweat, thinking, "Oh bloody hell, I said the wrong thing there!", but it's not often now. I know it doesn't matter all that much, even if I did. People are forgiving.)

Back then, I assumed that I irritated the people who talked to me and that I deeply offended people who didn't. Other people's problems were about me; if people were in a bad mood, it was because I had pissed them off. I used to think I was paranoid (and I was, a little), but I was living with someone whose every bad mood, whose clinical depression was my fault. My words, my attempts at love, made other people ill.

And this was the greatest pain of my loneliness; I had a heart swollen up with love and nowhere for it to go. So, in my mind, it fermented and oozed out, inappropriate and toxic. I held back from my friends and family, except when I gushed to them. I lied to them, putting a positive spin on my marriage to rival any Thatcher eulogy, but I was also dishonest about my health, I hid my sexuality for a long time and I wasn't very good at simply talking about my life, because my life had to be as dull as I was.

It's a dreadful New Age cliche that you can't love another person until you can love yourself, and I can't say it's true, but self-loathing is a slight obstacle. I didn't love my kith and kin as much as I could have (as much as I do now) because I felt I couldn't afford to; my love was dangerous and everything was fragile.

This is loneliness. That jagged rock in your chest, that inarticulate need for other people (What is that need even for? Love? Company? Physical contact? A sense of belonging? Just enough of the right kind of social interaction?) makes you quite bad at this stuff. You clutch at people, only to hold them at arms' length. You mistrust their intentions and you mistrust your own feelings. You lay awake thinking you must have overstepped an unseen mark, you must be feeling the wrong thing, you must be manipulating the people who bother to be nice to you. Then you fall asleep and dream about it.

...

Nobody gave me the advice, but I knew that lonely people are told to seek out the love they're missing, to find those new and brilliant people who are bound not only to exist, but to be hidden in plain sight, just around the corner, with a similar person-shaped hole in their lives. Not only are neither romantic love or friendship easily sought out, (do we, any of us, know anyone who has found a friend or partner by putting on a pith helmet, clasping a big net and hunting them down?) but the seeking, the feeling around in the dark for a profound connection, is bruising. Because you know John isn't your soulmate, so the fact you get along so well means nothing. And Jessica is lovely but doesn't seem instantly smitten with you, so best move on. If you set about looking for friends - let alone lovers - then all social interaction becomes about desperate hope, disappointment and rejection, sometimes on both sides.

It gets hard to be charming. Your desperation may not show, but you can get defensive and snappy (I like corduroy - you got a problem with that?), or self-deprecating to outlandish adolescent degrees (I'm a terrible, terrible person and if you don't hate me already, you soon will!). You blurt out how much you like someone when your actions were happily speaking for you or, afraid to hint at your feelings, you do nothing and show nothing and nobody ever knows.

...

My happy ending was complicated and largely accidental. It wasn't about romantic love or assembling a new cast of better friends - I was and still am very lucky with friends. It wasn't even about escaping my abusive marriage - I escaped after I stopped being lonely. By then, I knew I had friends, I knew I would be loved, and I had noticed the difference between how my friends made me feel and what was happening at home - the difference between conversations that concluded Go fuck yourself and Keep smiling. It was a combination of things, which enabled me to trust myself and to trust others. I became a better friend. Less clutching. Less distance.

...

People vulnerable to loneliness, through introversion, illness, sensitivity and intellect, are my people. So I know - and love - people who express loneliness and even though I've been there, I don't know how to help. I was about to talk about a friend who described herself as having no friends, but two different people have done this in as many months. And I think, "But I am your friend." and I want to say that, but I can't.

After all, a lonely person doesn't want increased contact with just any old person, perhaps especially not someone who has noticed their loneliness - how could they trust that, even if it was, in principle, welcome? Love is not a favour you can bestow on a person because they are in need of it, and loneliness can make even the most genuine spontaneous interest feel like that; they just feel sorry for me, or worse, they're just doing their good deed for the day to feel good about themselves and even, most shamefully if they like me, there must be something wrong with them.

We have the opportunity to be kind, to pay attention, to take an interest, to bother with the people around us, to make ourselves available for connections we might not be aching for, but would consider welcome. But loneliness is something folk need to find their own way out of - not because it is an act of will, but because it is private tangle, with cutting threads and complex knots that can't even be seen from the outside.

Monday, April 15, 2013

Blogging Against Disablism Day 2013 is now underway!

The eighth annual Blogging Against Disablism day will be on Wednesday, 1st May. This is the day where all around the world, disabled and non-disabled people blog about their experiences, observations and thoughts about disability discrimination (known as disablism or ableism). In this way, we hope to raise awareness of inequality, promote equality and celebrate the progress we've made.

How to take part.

1. Post a comment below to say you intend to join in. I will then add you to the list of participants on the sidebar of this blog. Everyone is welcome.

2. Spread the word by linking to this site, displaying our banner and/ or telling everyone about it on blogs, newsgroups, Facebook, Twitter, Pinterest and so on (we are using the hashtag #badd2013). The entire success of Blogging Against Disablism Day depends entirely on bloggers and readers telling other bloggers and readers in advance.

3. Write a post on the subject of disability discrimination, disablism or ableism and publish it on May 1st - or as close as you are able. Podcasts, videocasts and on-line art are also welcome. You can cover any subject, specific or general, personal, social or political. In the previous seven BADD, folks have written about all manner of subjects, from discrimination in education and employment, through health care, parenting, family life and relationships, as well as the interaction of disablism with racism, sexism and other forms of discrimination. Every year I have been asked, so it's worth saying; the discrimination experienced by people with mental ill health is disablism, so naturally posts about that are welcome too.

Blogging Against Disablism Day is not a carnival of previously published material. The point about doing this around one day (or there abouts) is that it is a communal effort and all the posts connect to one another. You can of course use your own post to promote other things you've written in the past as you wish.

4. Come back here to Diary of a Goldfish on the day to let everyone know that you've posted and to check out what other people have written. I shall post links to everyone's posts (slowly) throughout the day, creating an archive. However, I do need you to comment and leave the URL of your post or else I shan't find your post and won't be able to link to it.

This year we have both a Twitter account @BADDtweets and a Facebook Page where there will be notifications of new posts and updates to the archive during the day.

Accessibility

Naturally, Blogging Against Disablism Day invites contributions from people with all variety of impairments and none at all. You are welcome to contribute with podcasts, video-blogging or anything else that allows you to take part. And whilst May 1st is when this all takes place, nobody who happens to have a bad day that Tuesday is going to be left out of the archive.

If anyone has any questions about web accessibility, I recommend the Accessify Forum. I am not an expert on web accessibility myself, so if there are any suggestions about how I can make this day more accessible, please e-mail me at diaryofagoldfish at googlemail.com

The Linguistic Amnesty

Whilst discussions about language and the way it can be used to oppress or empower us are more than welcome, please respect the language that peopleuse, particularly to describe themselves in their own contributions. We all have personal preferences, there are cultural variations and different political positions which affect the language we use. Meanwhile, non-disabled contributors can become nervous about using the most appropriate language to use, so please cut everyone as much slack as possible on the day.

At the same time, do not feel you have to use the same language that I do, even to talk about "disablism". If you prefer to blog against disability discrimination, ableism or blog for disability equality, then feel free to do so.

I've written a basic guide to the Language of Disability (updated for 2013) which I hope might explain some of the thinking behind the different language disabled people prefer to use about themselves.

Links & Banners

To link back to this post, simply copy and paste the following code:

These banners have seemed popular over the last couple of years and I am yet to think of anything better. If anyone fancies editing these images or coming up with something new, then please do so. You are free to use and mess with these as you like, so long as you use them in support of Blogging Against Disablism Day. If you already have the banner, you just need to change the URL that it links to from last year's BADD. Otherwise, you simply need to copy the contents of one of these boxes and paste it on your blog, in a post or on the sidebar as you like. The banners come in two colour combinations and two sizes. The sizes are a 206 pixels square or 150 x 200 pixels.

This is the black and white banner which reads "Blogging Against Disablism". Here's the code for the square one:

This is an updated version of my 2008 post The Language of Disability. As before this is just me explaining the different terms as I understand them and may not be all that comprehensive. Where I express my opinion (which I'm going to), I don't pretend to speak for anyone else.

Whilst I frequently harp on about language and its importance, I am always alarmed when discussions come to a standstill over a simple word or phrase. This is why each Blogging Against Disablism Day, we have asked for a Language Amnesty; discussions of language are welcome, but we need to bear in mind that we're all coming from different places (quite literally).

Whether language is correct or incorrect depends entirely on what the speaker means to say. So the language of disability hinges on what people understand disability to be. The main controversy being

Disabled Person vs. Person with Disabilities

The preferred term generally hinges to on (a) geography, (b) identity politics and (c) a person's particular medical condition or impairment. And, unsurprisingly, a person's identity politics is likely to be influenced by both geography and their particular medical condition or impairment.

Alexander Pope, described as a hunchbackand a cripple.

In the United States and Canada, person with disabilities or person with a disability is generally preferred. On-line, these are sometimes handily abbreviated to PWD. There, disability has been traditionally understood as something that is wrong with an individual; a medical condition, an illness, an injury, a sensory or intellectual impairment. For this reason, there are groups of people who wish to divorce themselves from the label. Some Americans with autism or deafness, for example, argue that their condition is not a disability, because they do not perceive it as any kind of problem.

Because disability is something that belongs entirely to the individual, it is correct to use this "people first" language. In this context, the difference between person with disabilities and disabled person is a bit like the difference between vase with a break and broken vase. It is also far more appropriate, for example, to describe someone as a person with depression than a depressive person. Since depression (or any other condition) might be the disability in this context, person with a disability makes total sense.

In the United Kingdom, disabled person is more often preferred. Whilst not everyone understands or agrees with the politics, the reason this term has been advocated is because of a way of understanding disability called The Social Model of Disability. This asserts that there is a difference between those limitations we experience because of medical conditions, injuries and impairments and those limitations we experience because of the artificial social and physical barriers we experience in society. Only this latter group of limitations may be called disability; it is, after all, the only thing that we all have in common and the only thing we have any hope of changing.

Many people agree that the limitations that disabled people face arise from these two different sources, but this use of language remains somewhat radical, even thirty years after its conception. What people tend to hear is "It's all society's fault and if there were only a few more ramps about, we wouldn't have any problems."

There will always be some people who have difficulty doing some things, and some of us will always have unpleasant physical, cogntive and emotional symptoms to contend with however society might improve. However, people who take this position simply don't call those problems disability. And because disability is something people experience as opposed to something that belongs to them, "disabled person" is preferred. It is a political status, very much like being queer or black. And as with those terms, a small minority of people prefer to use Disabled with a capital D.

It should be noted that not all British disabled people know of, let alone understand or subscribe to the Social Model, and of course most disability activists and academics in the rest of the English speaking world are well acquainted with these ideas at this point. Many people use both terms at different times. But that's your basic difference between the two terms, as I understand it.

Other Terms for Disabled People

Often attempts are made to take the sting out of the concept of disability. Dis- is, after all, a negative prefix and disabled is often used in other contexts, such as computing and electronics, to indicate that something is completely non-functioning. What's more, because of our negative cultural attitudes towards disability and disabled people, some people just don't want to fall under that label. In the UK, many of the campaigners against recent cuts in disability benefits and services, prefer to describe themselves collectively as sick and disabled or spoonies (after Christine Miserandino's Spoon Theory). Throughout the world, there are some deaf sign-language users (often writing Deaf with a capital D) who do not consider themselves disabled.

Some people argue that if society sees disabled people as useless and dependent, then the solution is to use another term. We should "see the ability, not the disability". Others even argue that "disability is a state of mind" and last year, around the Paralympic Games, a famous poster declared The only disability in life is a bad attitude.

Personally, I don't see a problem with the negative term; whilst it is by no means the worst thing that can happen to a person, disability means being treated differently and therefore is a disadvantage. However, several attempts have been made to find a neutral or even a more positive way of describing our situation. Most of these are euphemistic, with the rather odd exception of handicapped.

Handicapped / People with Handicaps

Lord Byron, who was described as being lame.

Handicapped has a very bad name in the UK, and seems to be losing popularity elsewhere. Part of this is due to the myth that handicapped comes from begging, "cap-in-hand", from a time where the only conspicuous disabled people had to beg for a living.

This isn't true. "Handicap" is a common word in horse-racing, golf and other sports and originates from a medieval gambling game "hand-in-cap" which involved drawing lots. There is a full explanation in the 1911 Encycopedia Brittanica, composed before handicap was first used in the context of disability.

Some people who take objection to words beginning with D, see handicapped as a positive label. In sports, a handicap is a disadvantage imposed on a superior competitor in order to make it a fairer game or race. So if we are handicapped, well maybe we're just brilliant and this is the universe's way of leveling things up for everyone else. A rather fanciful but undoubtedly positive notion.

Unfortunately, experience has put me off this term. Because it fell out of favour long ago, sensitive people tend to avoid it, regardless of whether they understand the objections against it or the etymological arguments. I'm afraid its usage has been accompanied by ignorance and prejudice often enough that I cringe every time I read or hear it. Which is a shame.

Modern Euphemisms for Disability

Florence Nightingale was described asan invalid

There are a number of euphemisms used when talking about disability, especially - though not exclusively - where disabled children are involved. This is understandable; if the world sees disabled as broken and useless, then children with this label are in danger of growing up with some pretty negative ideas about themselves. Many parents and educators try to protect them from this with more innocuous language.

I have great sympathy with this, but I'm doubtful about its efficacy. When someone is determined not to say what they really mean, they don't always notice what they're really saying. So to speak.

Differently-abled

Some disabled people's abilities are in no way inferior to those of their non-disabled counterparts, but merely different. The wonderful Institute for the Study of the Neurologically Typical demonstrates rather brilliantly, as well as everything we saw at last year's Paralympic Games.

Unfortunately, so long as different is perceived as an issue, it is a disadvantage. Imagine if someone described people who weren't white as differently-coloured or people who weren't men as differently-gendered. This is by no means neutral language.

And that's only if we give the phrase the benefit of the doubt. If we take it literally, everybody is differently-abled and the phrase means nothing at all.

Physically Challenged, Intellectually Challenged etc.

The language of challenges has often been used to replace language which was felt to condemn. For example, replacing delinquency with challenging behaviour, or poverty with economic challenges. Yes, I know it is a common tool of the fork-tongued, but it's not always complete nonsense.

However, our impairments are not challenges. A challenge is necessarily something which may be overcome, whereas the status of our bodies and brains is pretty much immovable. These terms also nod to the triumph over adversity narrative which is as problematic a stereotype as anything that disabled ever threw up.

Special, Handicapable etc.

These terms go beyond an attempt at neutrality and try to make disability something positive. I've never actually heard a real person use the word handicapable out loud, but it is used. Special, meanwhile, is widely used, particularly in education. Special Educational Needs can encompass a massive range of impairments, from severe intellectual impairments through giftedness to mobility impairments.

Seahorse wrote an excellent piece about special and the way that teachers and non-disabled children can react to this label. Also on the BBC Ouch Blog, Nicola has also written about the way teachers reacted to her, destroying her confidence with the best of intentions.

The word itself doesn't cause this patronising, sometimes exoticising attitude towards disabled people, but it undoubtedly backs it up. I'm afraid I have little good to say about this word and similar variations on the sentiment, but then I guess that being regarded as special and being regarded as equal are mutually exclusive.

Toulouse Latrec was describedas a midget, even though he wasover five foot tall.

Reclaimed Terms

Informally, many disabled people refer to themselves and one another using terms which have historically been used to insult, oppress and patronise them. The main two examples are gimp which gives me images of black patent leather and chains but is very popular in the US and crip from cripple. Other examples include freak, mutant and more impairment-specific terms like nutter and spaz.

Many disabled people, having had a period of coming to terms with their disabled identity, have a phase of using these words a lot, reveling in both the act of subversion and the sense of group-identity they provide. However, others are genuinely upset by them, especially those with raw memories of these words being used in malice. I tend to the view that as with all humour (because this is largely about humour and fairly dark humour at that), there's a time and a place.

Disablism vs. Ableism to described Disability Discrimination
Both these terms are neologisms to describe disability discrimination,and much like homophobia, don't make a great deal of etymological sense. They are imperfect - disability discrimination is more accurate, but more of a mouthful. The reasons different people use these terms are very similar to the reasons people use disabled person or person with disabilities.

If disability is an individual lack of ability, i.e. we are people with disabilities,then ableism is more accurate because it is discrimination between people of different levels of ability. If we are disabled because of the limits placed upon us by society, then disablism is more accurate, because it is discrimination against disabled people. This is why I called BADD Blogging Against Disablism Day, because Blogging Against Disability Discrimination Day seemed too long, I don't believe the abilities a person has are wholly independent of the society in which they live and to be honest, I had never heard of ableism back in 2006.

Terms for people who are not disabled.
The traditional term is able-bodied, sometimes temporarily able-bodied (or TAB) to encourage the idea that anyone could become disabled in the future (although strictly speaking, most people won't). Many people reject able-bodied because disability is not about bodies, and even when people understand disability to be about individual impairments and limitations, some of these impairments are not physical and even some of our impaired bodies are extremely fit and capable of remarkable feats in sport or dance.

It may be appropriate to talk about able-bodied people when talking specifically about people without physical impairments, but able-bodied as an antonym for disabled is problematic. People with physical impairments sit at the top of the disability hierarchy, and the use of able-bodied perpetuates the idea that the only real disabled people have obvious, usually visible physical impairments; a missing limb, a spinal cord injury etc.. People who pass judgement on those using disabled parking spaces will often say, "The driver got out and they were perfectly able-bodied." as if that's a judgement you can make on sight.

People who use person with disabilities tend to prefer to use person without disabilities and people who use disabled person tend to use non-disabled person. Some people have objected to the use of a negative to describe the majority of people, but we do this for several majority positions - being non-Muslim, for example, or a non-smoker.

Slang terms for non-disabled people include variations on Normals, Normies,Normates etc. (usually used in derision about the sort of people who would catergorise themselves as normal in discussions of disability), Walkie-Talkie-Types and Uprights. My favourite was a suggestion by my late friend Jack Pickard who identified himself as disability challenged.

Wednesday, April 10, 2013

My Gran was a very unhappy and unpleasant character. I think she suffered from untreated depression for most of her life, she had no friends to speak of, and had dramatic fallings out with, over time, almost every member of her vast family. As she became older and more infirm, she fell further in on herself, paranoid and suspicious of everyone she encountered, until she developed dementia and lost the ability to hold a grudge. Now my Gran is more cheerful than I can ever remember her being. When the nursing home took photos for a newsletter, Gran was the single smiling face amid the crowd of bewildered residents. Occasionally, Gran's old suspicious self seeps through, but only briefly, before she loses her thread.

Mum was helping Gran write a card out to Stephen and I, spelling out our names.

The card was because last Thursday, we performed the legal part of our marriage. The wedding is in July and the plan was to do the Registry Office bit very quietly indeed. We thought it was only fair to let our folks come along if they wanted, and soon enough there were eleven people there. But it was nice. It was quiet by most people's standards, and getting underway at four o'clock in the afternoon (Remember four o'clock last Thursday? It was about then that the blizzard arrived.) it wasn't a long day.

I couldn't pronounce matrimony - I didn't pronounce matrimony, so there's the possibility that legally, Stephen and I have another kind of legal contract altogether - possibly something only covered by Klingon Law. Sophie is practising her vocal skills at the moment, and gave a running commentary like a less articulate Huw Edwards (although there were times even during the Royal Wedding where "Bla bla bla bla bla." would have made perfect sense). Both these things worked in our favour, because it all felt quite strange and giggleless silence would have made everything rather tense.

Suzi the toy poodle - the face of a very small white fluffy dog.

Later that evening, I discovered that, thanks to the considerable help of a certain gherkin fan, I won my benefits appeal. And the next day, a tiny white poodle came into season. This was significant because she lives with stud dogs, her owner was away and Stephen's parents had offered to take care of her if this occurred.

Dogs teach us something about hierarchy and nature. Ajax is the oldest, largest and most intelligent dog, and the one aggressive in play; he'll growl, bear his teeth, pounce and gently nip at you. He'll bound after pigeons in the garden (but will slow right up if they don't fly away). He's very attached to us all - when Stephen and I were away and sent a postcard home, he took it for himself and wouldn't let it go - but he's not very good at doing what he's told. Yet somehow, he is at the bottom of the pack, and even Suzi, size and temperament of a rabbit, seems to have inserted herself above him; she goes first, he gets out of her way.

Ajax and I, for a sense of scale: A black fluffy dog sits on theback of a sofa behind me (a white woman with brown hair).He is small, but much bigger than the white dog.

Few animals are hierarchical in the same way dogs are, and people certainly aren't. But people are the only ones who ever argue that there's any obvious natural system (smarts, strength, seniority etc.) that determines who should be in charge. They ought to observe toy poodles.

Anyway, all in all, life is treating us very well. We're planning the wedding for the summer, we're watching the skies for the possibility that there might be a spring at some point between now and then and I'm writing lots and lots and lots (at least, by my standards, which means I'm getting on with my work, at a slow but steady pace).

There is, in fact, a link between the welfare state and the deaths of the Philpott children. Although domestic violence can effect anyone, from any walk of life, people in poverty are more likely to experience domestic abuse.

Sometimes, this is explained as if being poor adds more pressure on relationships (it certainly does) and this pressure leads to violence. This is a tragic oversimplification. People don't become violent when they have less money. What poverty does is makes people more vulnerable to being abused and abusers - whatever their income or class background - prey on the vulnerable.

If we really cared to, there are various ways in which this problem could be addressed:

1. The benefits system is likely to make a person more vulnerable to control and manipulation.

Given that the Chancellor of the Exchequer effectively argued that Philpott's children should not exist, it should be no surprise that poverty and the welfare system can easily wreck a person's self-esteem. It can often feel that your money is not really your own, that you are a burden on others, that you are failing to make a contribution. You are surrounded by materialist images of happiness which are entirely unattainable. If you are working, you are likely to be in unstable, insecure employment. If you are not working, you may be locked in an increasingly desperate hunt for work, taking rejection after rejection. If you unable to work through ill health, caring responsibilities or other circumstances, then it can feel like your life has come to a dead end, that you have failed as a person, as a partner, as a parent.

Much of this is instantly solved with a higher minimum wage. Most benefits claimants below retirement age are in work - as both Mick Philpott's partners were - but not earning enough to live on. As Louise McCudden writes, "We shouldn’t be ashamed of having a welfare state but we should be more ashamed of what it represents. The amount we spend on benefits is a measure of how much poverty and inequality we are, as a society, prepared to tolerate."

Even when it is providing an adequate income, the benefits agency treats people badly. The language letters and agency workers use is often accusatory, untrusting; they've got their eye on you. You are constantly asked to justify yourself, your limitations and, often enough, made to argue with decision-makers who say that you (your family, friends and even your doctors) are being dishonest.

The language the government and media use about benefits claimants - all of us - is even worse. Is there any other group of people in our society where a newspaper could print a photograph of six children, victims of arson, with the headline describing them as a "Vile Product" of anything?

Groups like young single mothers have been stained by this rhetoric for years - much longer than the current more widespread assault on those who need state help to live. Impoverished single women with babies, especially if they are (or could pass for) teenagers have long been condemned as roundabout prostitutes; girls who, despite their extreme youth and vulnerability, cynically set out to have unprotected sex in order to have a meal-ticket child that they will treat like a shiny new doll. Single mothers and their children are particularly vulnerable to abuse, not because these women are feckless and promiscuous and let any man into their homes, but because years of poor treatment, media rhetoric and the judgement of their neighbours has made them feel pretty rotten about themselves.

And so when someone is nice to you, says they love you despite all this, but occasionally hits you and uses the same derogatory language as our leading politicians...

2. Factors which make a person vulnerable to domestic violence also make them more likely to be poor.

Disabled people, including those with mental ill health, single parents, adults who have grown up in the care system, adults who were abused as children, trans people, immigrants, people who have experienced massive disruption in their lives such as serious illness, injury, bereavement or desertion are all more vulnerable to domestic abuse regardless of their financial situation. But they are also much more likely to be poor, to have low or unstable incomes or to be unable to work or find work.

This doesn't happen by accident. This is caused by inequality, prejudice and discrimination within our society. There will always be richer folk and poorer folk, always be folk who lack confidence and are more easily taken advantage of. But it is completely unnecessary that disadvantage and vulnerability should be so often packaged together like this, that superficial factors about a person's identity should make it possible to predict one's chances of falling victim to a particular kind of life-altering violent crime.

3. Our welfare system takes an all or nothing approach to live-in romantic relationships.
If you share a bed with someone on a regular basis and need to claim an income-related benefit, you will be considered living together as if married. You will also be treated as if you share financial responsibility for any children you have. If one of you is earning, that could mean the other person is no longer entitled to financial support, or has that financial support greatly reduced. This occurs regardless of the nature of your relationship, the commitment you have, the things you agree to between yourselves.

Single claimants who live in shared houses, especially with housemates of other genders, frequently have to prove that they are not, in fact romantically partnered. Couples who are getting together must inform the benefits agencies as soon as they begin to live together, as if there is a single magic cut-off point between complete independence and complete interdependence.

This causes all manner of problems, but it makes people significantly more vulnerable to domestic abuse in various ways:

It causes victims to be financially dependent on their abusers.

It causes abusers to be financially dependent on their victims. This does not necessarily put victims in a position of power, especially when a situation of financial dependence hasn't been chosen by either party.

It causes victims and abusers to be bound together in any situation of fraud. An abuser may outright refuse to be honest about her income, she may be working for cash that she keeps for herself, or have money stashed away that only she may access. A victim may be in a position where he must either commit fraud or have no money to pay the rent.

It complicates step-parenting relationships. A parent's partner is condemned to be either completely informal or at least partly financially responsible for a child, this relationship determined by the state as opposed to anybody's feelings or level of commitment.

It fosters artificial progressions within a relationship. Abusive relationships tend to progress very quickly as abusers try to achieve the maximum amount of control over their victims as soon as possible; moving in together, becoming financially entangled, getting pregnant and so forth. The black and white model forced upon the relationships of benefits claimants make this much easier; there's little room for gradually getting together and experimenting with living arrangements.

It isolates people in their relationships. Because financial dependency kicks into place the moment a couple moves in together, it places pressure on claimants to keep their relationships quiet or even secret - sneaking a partner out the back door in the morning - until the couple has come to a position where they are happy to live together permanently and become financially intertwined. In some cases, if an abuser insists on moving in but refuses to contribute financially, a victim may be forced into outright lies about their relationship, making it extremely difficult to seek help. Abusers thrive on such isolation.

All this makes people on benefits and their families much more vulnerable to abuse. It makes children more vulnerable to abuse. This is another major factor effecting the statistics which suggest less favorable outcomes of the children of single parents.

It is tricky to work out how this is solved - clearly, it is much cheaper for two people to live together as a family unit than to live apart and an unemployed person with a working partner isn't so badly off. However, a situation of instant and total dependence should and could be avoided. For example, it should never be the case that a disabled person, twice as vulnerable to domestic violence as a non-disabled person, should become completely dependent on a partner if they cannot work, as many are today.

4. In the absence of talent or privilege, abusers are often unemployable.
Abusers tend to be narcissists, angry at a world which will never treat them with due deference, gratitude and material rewards appropriate to their greatness. There are some very rich and powerful narcissists about, but they have been very lucky, talented in a particular way or born into wealth and privilege. Even then, they will never quite get the treatment they believe they deserve, and tend to fly off the handle if a partner, child, employee or populus doesn't behave exactly as they'd wish.

Lower down the social scale, narcissism is a bigger problem for the individual - after all, they deserve to be wealthy, successful and admired, so something's gone wrong if they're not (and that has to be somebody's fault). It's hard to hold down a normal job because it's beneath them, their colleagues and bosses are all idiots, everyone they deal with is stupid and weak. They are not ordinary people with ordinary problems; they are the smartest, wisest, most generous people in the world, so their potential is completely wasted if they are not in charge, not telling everyone how things should be done.

Mick Philpott was able to make himself a little kingdom to rule over; so many children, multiple partners whose lives he micromanaged, isolated from the rest of the world - in part, by their fame as a huge polyamorous family living in a council house (described as workless, even though it was only the patriarch who didn't work). But although the sheer size of his family is extraordinary, it's not an extraordinary tactic - it is amazing to me that anyone could assume he wanted more children in order to claim more benefits (You can't make a profit out of having babies for benefits). He simply wanted to control his women and expand his dominion.

We all know poor but abusive people who can comfortably consider themselves Caesar in their own homes, and maybe one other safe environment; the local pub, a church, an on-line forum - places where their charm works well enough and, for whatever reason, expectations of decent behaviour and competence are low.

And that's not the fault of systems, only the fault of society which allows such people to operate, which prefers to talk about a man's unemployment rather than his domestic violence when it is his domestic violence which has killed six children. A society which condemns an entire family - not just innocent children but innocent dead children - because of the unemployment of the man who happens to be in charge. A society where many people seem to think that those kids died because of the social class they were born into as opposed to an act of violent revenge perpetrated by their abusive father.

Monday, April 01, 2013

When I got married for the first time, I did not seriously consider changing my surname. My ex complained about it beforehand, but when the time came I think he congratulated himself for being so modern. There was one person in my circle of acquaintance who had a problem with it, complained to my mother and insisted on address me as Mrs Ex's Surname from there on in. This annoyed me, but we weren't close. Meanwhile, everything was straightforward - much more straightforward than if I'd changed it. I didn't have to change my name with any companies or institutions. I sometimes didn't bother correcting strangers who addressed me as Mrs Ex's Surname but then, I didn't always bother before we were married, same as I don't bother correcting every time I'm called Miss or Mrs instead of my preferred Ms. There are only so many hours in the day.

I'm sure other people, in other communities, experience far more hassle than I did or maybe feel more offended at the misnaming. Personally, I have had far more trouble maintaining a consistent title- with one bank account, I had Ms on my debit card, Mrs on my cheque book and Miss on my bank statements!

This marriage is completely different - I feel like I need to say that a lot, not as a defense (the first one doesn't count; this is the real thing.) but because I think folk need to be aware of the fact that these things can be so completely and utterly different that it's hard to use the same words to describe them; love, romance, even marriage. Abused and otherwise miserably partnered people often feel that any given person will always have the same kind of relationships, with roughly the same dynamics, and the same kind of problems. Abused and otherwise miserably partnered people often buy into the fairly widespread cultural meme that Love Hurts and folk - especially men and women - can never have both passion and peace with one another. This is not so.

However, this has nothing to do with the fact that the surname thing is looking very different this time. It's not because I am more in love (I am perhaps in love for the first time) or more committed (I was very committed, but this time I am certain*). It's about other things which have nothing to do with the quality or strength of this marriage, but matter a lot to us. They include:

It's something we're talking about together. The whole subject is completely different when two people who are getting married ask the question, "What shall we do about our names? Shall we share one? What shall we call ourselves?" Frankly, I swung back and forth about what I should do until the conversation became about our choice. This changes everything.

Stephen's family have welcomed me in and offered me all manner of unconditional things I have never had before. I feel a tremendous closeness and affiliation with them. There's a part of me that really likes the idea of sharing a name with them, almost like taking the name of an adopted family.

At this point in my life, I am known by very many names; The Goldfish, Deborah, Deb, Ms Kelly, D H Kelly, Auntie Deborah, Agent Bum Bum, Love, Sweetheart and all manner of more personal petnames and nicknames (in English, Welsh and Latin). Changing the name I am known by in some contexts would not be the same as changing my identity. In fact, it provides the possibility of another identity. I like being all these people. It actually feels like an opportunity to have another name, another identity to do things with.

(1) isn't a reason to change names, but a starting point from which everything is on the table. But see what (2) and (3) have in common? Immensely personal. To do with us, our families, where we are in life.

Here's another personal thing. I would never consider changing the name that I write under. Even though I have little published work out there, I like being D H Kelly. It is a good name for a book spine. Even as a child, I wrote stories with by D H Kelly under the titles. However, given that I am working towards a career where this name is associated with a body of work, I quite like the idea of having another name for other things I want to do in my life. Often living with two surnames in use is presented as a compromise, but I think that's only because it's something men nearly never do. Having spare names can be useful.

There are folk who think that a woman changing her name upon marriage is necessarily making an unfeminist decision (all stats US - I'm sure keeping names is both far more common and acceptable in the UK, unless I roll with an extraordinary crowd). This really bugs me, for several reasons:

For one thing, feminism is not about individual women and the personal decisions they make - personal decisions that some women will necessarily find easier and more desirable than others. Feminism is all about removing social and political pressure, so that women (and others) have a real choice. Naturally, women who make certain choices set a good example to others (it is possible to do this another way, even if the world suggests otherwise), but the choices themselves are personal, complicated by personal circumstance, and so haven't got much to do with a social and political movement. Women shouldn't have to apologise to our sisters for the personal choices we make around identity - in fact, feminism is all about relieving such a burden.

Most same-gender married couples I know have a shared surname. They presumably arrived at that through mutual discussion, weighing up their options, the individual feelings and any professional factors around the names they had. This is how it should be done. Every couple, upon marrying or having a child should have a conversation which begins "What shall we do about names?" It could be a very short conversation, it could be an ongoing discussion over a periods of months.But even if we all did this, unless we do away with the custom of familial surnames altogether, around half the couples who share a surname would share a husband's surname and around half of all children would take their name from a father. Sharing a husband's name is not wrong; the problem is that women feel under pressure to do so and couples often don't consider the other options.

Meanwhile, the reasons that there isn't a completely free choice relate to two far bigger, far more problematic aspects of sexism which we need to address head-on.

The first is about legitimacy. As demonstrated by my own experience, some relationships are stronger, more committed and generate more love, happiness and creativity than others. Some are utterly miserable and still others are dangerously awful. However, we cannot see into people's hearts and there are very few external signs which might indicate what kind of relationship two people might be having.

Yet in our culture, we raise romantic partnerships above all other relationships; we see lasting romantic love as something both necessary and sufficient for happiness, particularly for women. Then we set about judging whether or not someone's relationship is legitimate according to very specific and ever-changing criteria. For some couples - for example, those where one partner is coming through the immigration process - the subjective legitimacy of their relationship is a very serious matter. For other couples, legitimacy is an on-going issue among family and friends. Some examples for criteria would include:

Whether or not a couple live together (even when they have work in different locations).

Whether or not a couple are married (and when this happened, how this happened)

Whether or not a couple have children together (especially if they have children by other people)

Whether or not a couple consists of a man and a woman (preferably straight and cis gender)

And so on and so forth. I have heard folk cast doubt on the strength and potential longevity of a second marriage because the second wife wasn't as pretty as the first. People are odd.

For some folk, marriage itself is about making a relationship legitimate - it is about a public declaration and celebration of a commitment. Some people choose not to marry because they feel affronted by the idea that they need to prove their love in a public way. When it comes to personal choices, we do what feels right, which is so complex and personal it could never be neatly analysed by anyone on the outside. Some non-religious people feel the need to marry in church; this may be about their parents or community, ideas about a proper wedding from childhood or for reasons they don't fully understand. This is absolutely fine. I would only criticise someone (e.g. the Catholic Church) who claims that marriages outside church are less legitimate**.

And this is exactly where the pressure on couples to share the husband's name comes from; it's something that, for some people, renders other people's marriages legitimate or not. I'm sure that, despite the general grooviness of our social and family circle, some people would see Stephen and I sharing a surname (mine or his) as a sign of my greater commitment to this marriage. And that's a problem. But not one we can personally solve with any choice we make.

The other issue is about gender and relationships. As with so many more significant lifestyle choices - being partnered, getting married, having children, the distribution of domestic work and childcare - we talk about this stuff as if women are making unilateral decisions. We talk about a woman choosing to keep her name or take that of her husband, as opposed to a couple choosing to keep their own names etc., in the same way we talk about women choosing to marry, choosing to have children, choosing to stay at home or go to work etc.. In reality, whilst individuals have a personal veto (and we're still fighting for all women to have such a veto), when it comes to relationships, reproductive choices, childcare and paid work, we're often talking about a completely free choice that nobody has.

Romantic relationships involve many factors of complex chance and at least two ready-formed people whose life circumstances will be as muddled and messy as everyone else's. Women don't just make this stuff happen. Neither do men. But we live in a culture where these subjects are spoken about in these terms; relationships and children are women's responsibility. Women must make the right decisions. Women must look after their men and their children, whilst resisting the loss of their own identity (which to some means a professional identity, and others means a youthful, sexually available identity). When a couple takes the wife's name on marriage, I should imagine that the wife, rather that the husband is the target of any criticism - how could it have been his idea? Whilst we expect men to pursue sex, they are treated as weirdly powerful yet passive entities in long-term romantic relationships.

The name thing is a rather small matter - not many people get to learn our surnames, let alone how we acquired them - but any argument for or against a particular course of action on the part of women plays into this model. If we want to change the historic bias towards patronymic surnames, we need to stop talking about a woman's decision at marriage and start talking about couples and the pressures they face.

* Quite honestly, when I married my ex, I didn't expect it to last. Part of my motivation to get married was to have legal protection, because he frequently threatened to leave and take everything. Yes, this was an utterly stupid reason to marry - one of many utterly stupid reasons involved. But I just wanted to make things better and failed to even entertain the (now) obvious strategy for doing so.

** One odd aspect of the Catholic Church's rules against divorce is that previous marriages outside the Catholic Church don't count - if you previously married in a registry office or a synagogue, you may have this marriage discounted and remarry in the Church (it's not as simple as that, but it is possible). It is as if nobody who didn't marry in the Catholic Church is married at all. However, I am yet to meet a Catholic who actually sees it that way. Meanwhile, I know Catholics who were abandoned or abused by spouses who can never marry again within their faith, without a lucky lightning bolt taking out their exes.